Lucy

A little advice please re going back on cyclophosphamide

8 posts in this topic

Hi,

If anyone has any experience I would greatly appreciate their thoughts.

On Sept 3rd I went on 1 pill a day 50mg of cyclophosphamide. On Oct 3rd I went up to 2 pills a day. The doctor did this step up process because I have had troubles taking medication in the past. On Nov 13th I ended up in the hospital for a week and a half. I was totally dehydrated, could barely walk, lift my arms from muscle weakness and I had gotten salmonella food poisoning along the way. My local doctor said my immune system was so weak I was bound to catch the first thing that came along. I had to get blood (my hemoglobin was 84) and IV for a week and antibiotics white blood cell count 2 - to just get out of bed, with help. My SD specialist wants to review me going back on the cyclophosphamide after I get a little stronger, maybe a lower dose. My question is has anyone else had a difficult time with this drug and were they able to go back on it. My SD is 3 years and aggressive skin involvement but not in my organs to date.

Thank you,


Lucy

Diffused Scleroderma

Diagnosed Dec/06

First Sympton Nov/05

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Lucy,
What a nightmare! I'm so sorry that you had to go through all that. I know how scary it was for you because I've been there. Your hesitation on going back on cyclophosphamide is a natural reaction and should be taken seriously.

In year 3 post-diagnosis I was put on oral cyclophosphamide due to developing pulmonary fibrosis. It only took 3 weeks for me to catch a cold that became pneumonia, then into septic shock. I was in the hospital for 2 weeks. The first 2 days I was on a respirator because I was unable to breathe on my own. They put me on 5 different antibiotics because they didn't know what the infection was from. I was in ICU twice - the first time on entering the hospital then the next weekend from a staph infection. Like you, the ordeal left me extremely weak and it took several months to get my strength back.

My rheumatologist wanted to put me back on cyclophosphamide but I refused. I did my research and suggested cellcept. So that's what we went with. I've been on cellcept now for 1.5 years with no side effects that I'm aware of and considerable lung improvement. I get a pft next month, so I'll know more about how much I've improved. I don't have skin involvement so I can't speak to that. Here are some studies on Treatments for Skin Fibrosis. You might read through some of these options and discuss them with your doctor. Whatever decision you make, I hope it works for you. Please keep us informed.

Big Hugs,


Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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Hi Lucy

 

I've been wondering how you were doing and was hoping you were doing ok and that those new treatments were helping you. I'm so sorry to hear you are having such an indescribable time and really hope that things start improving for you. Take care!


Sending good wishes your way!

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Lucy,
I am so sorry to hear that the cyclophosphamide was problematic. I know when I was on IV cyclophosphamide, I drank a lot of water a day to keep the drug flushed out of my system. Because I was drinking so much water, my blood pressure was dropping very low. The cure for this was to eat a small bag of potato chips for the salt as I was flushing the salt out of my system with all the water. Good luck with everything. I know you had a hard time with Gleevec but it looks like Johns Hopkins is RX Gleevec outside of any clinical trials -- maybe you can get your doctor. to do the same for one pill of Gleevec a day. I know you felt that it worked. I am trying colchicine now. It is an antifibrotic that may/may not work. Lung Transplant doctor. says he has seen it work. In any event it seems to be maintaining my skin from where Gleevec left off although with Gleevec I was much more nimble in that my joints did not hurt. I am thinking only happy thought for you. Regards. Gidget

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Hi Janey,

Thank you for sharing your personal experience. It helped me confirm that I need to do what I feel is right for me and not just follow. I am going to take a break, get strong again and see my rheumatologist in the spring


Lucy

Diffused Scleroderma

Diagnosed Dec/06

First Sympton Nov/05

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Hi Snowbird,

you are always such a great supporter. loved hearing from you. not better yet but refuse to give up or give in. thanks.


Lucy

Diffused Scleroderma

Diagnosed Dec/06

First Sympton Nov/05

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Hi Gidget,

I think of you every week and hope you are still holding your own. I am just starting to investigate Stem Cell. Here in Canada it is an option to me. I think the high dose cytoxin was the same concept except I was left unprotected? Not sure going to see how I do until the spring and then see my rheumatologist to discuss.

Take care.


Lucy

Diffused Scleroderma

Diagnosed Dec/06

First Sympton Nov/05

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Hi Lucy,
The only stem cell programs that I know of that are tied to a clinical trial are as follows:
1- The SCOT trial - high dose radiation used to kill immune system and then your own stem cells introduced back to you. Lots of US locations.
2- The ASTIS trial - Northwestern trial - high dose of cyclophosphamide used to kill immune system and then your own stem cells introduced back to you. (This is similar to the ASSIS trial in Europe). Also has "cross over" feature. In Chicago.
3- Johns Hopkins trial - high dose of cyclophosphamide used to kill immune system and then wait for body to regenerate stem cells. Theory is that you cannot "clean" the damaged stem cells in the previous trials and as such, to give you back your stem cells means you are re-introducing the disease back into your system. In Baltimore
And then there are the stem cell transplants not associated with a clinical trial where you have the procedure done outside a clinical trial. Good luck with your decisions. I am back to Northwestern to see how bad my lungs have to get before I can't have a SCT. I just need to get my daughter through high school. The key to it all is to make sure you have a great heart as bad heart means that a SCT may not be an option as the procedure is hard on the heart. Wishing you all the best. Gidget

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